Monday, September 24, 2007

Chronic Pain


Neurologist "Oaklander sees many patients whom she describes as "bouncing around the health care system" for years with no firm diagnosis. She divides chronic pain sufferers into two groups. "One is the group that has an ongoing cause of their pain," she says. "The classic example of that is patients with arthritis. They have pain in their joints every day." Much more difficult, she says, is the second group: "Patients who have chronic pain without an obvious cause of tissue injury."

Connick falls in the second category, Oaklander says, noting that X-rays show broken bones, but not nerve damage. "It was only many years later when he was examined by a neurologist that his underlying nerve injury was identified and able to be treated," she said.

Oaklander concludes: "If you have chronic pain, don't take no for an answer....I think it's important for chronic pain patients to keep a sense of purpose, optimism and hope despite the indignities that many are subjected to."
* * * *
The problem with many doctors is that they don't consider nerve damage as a source of chronic pain.  They don't see anything that would explain it, so they consider the patient is exaggerating, perhaps that the patient wants pills to party with.  Or are concerned that if they prescribe pain pills, they'll be investigated and lose their license.  Or fob you off with some baseless concern that you'll become an addict (statistically, less than 1% of patients do, and most of those can be identified in advance because they have Addictive Personality Disorder) -- you wouldn't call a diabetic an "insulin addict" for taking their pills every day in order to function.
I was refused pain pills for years, despite sometimes reporting level 10-of-10 pain, because they just couldn'tsee that my arthritis was bad enough to produce a level 10.  They'd tell me to go take Advil, which is an anti-inflammatory and works on arthritis, but Advil is useless on neurological pain.  One would assume that anyone with enough intelligence to get through medical school would know that fact.
Obviously, taking a hot bath every hour or two is not something you could do while working full-time, but that was not registering with the doctors who were telling me to suck it up and go back to work.  Since I work at home, I could do that, and ThermaCare wraps came on the market right about the time that I went through my period of worst pain.  Still, no patient should be left to endure nonstop Level 10 pain for months with nothing but heating pad, hot bath and Advil.  It's inhumane.  (The only thing that kept me sane in that time period was that I was on an experimental sleeping pill that was strong enough to put me to sleep and keep me asleep; I could take it at 5 PM if the pain was too bad and sleep till 7 AM.  If not for that reliable escape mechanism, I don't know what I would've done -- maybe gone over to the hospital and slapped a couple doctors. ( )
I then went to a seminar given by a local pain management specialist who made it clear that even as little as 48 hours of nonstop pain can cause observable physical changes in the Central Nervous System, and therefore no patient should be told to just suck it up, not even for a couple days.  (His theory seems to be that these objective physical changes resulting from untreated pain might be at the root of fibromyalgia.)
As Oaklander says, "don't take No for an answer".  If your GP is afraid of repercussions against his license for giving you pain pills, then demand a referral to a neurologist or pain management specialist, who are less afraid because the AMA expects them to be writing a lot of prescriptions. 
My quality of life improved significantly when I found someone brave enough to give me a prescription for one pain pill at bedtime.  During the day, I can use baths and heating pads, but you're not supposed to leave a heating pad or ThermaCare on while you're asleep.  Capsaicin helps on small areas, but not for full body pain and not on any part that might come near bodily orifices.  (According to a Sandy Koufax biography, if the trainer put Capsaicin on Koufax with his bare hands, his wife made him "sleep with his hands outside the blankets".  You only need to touch one of your sensitive spots once to understand why.  It burns like hell on my knee, I don't even want to know what it would do if my arm got near my face while I'm asleep.)
Thanks to one Tramadol at bedtime, I can sleep, and that means I wake up feeling less like I've been hit by a truck and more like a human being.  There's no telling how good I would feel if I had gotten this prescription 7 years ago when I first asked for something to ease the pain so I could sleep through the night.

Patient Rights: Informed Consent


Professor Roger Homan – Ethical Advisor to reMEmber

The principle of informed consent is nearly sixty years old. During the
second world war internees in concentration camps had been used as
involuntary subjects in medical research; some, for example, had been
partly frozen in research on the effects of frostbite.

At the end of the war the Nuremberg Code offered the formula that has
now become standard not only in medical research but in therapeutic
procedures also. In its current applications, it requires that patients
should be told of the nature of any procedure - including purpose,
risks, and consequences – and that they should be given the option of
declining to participate.

Thus the term informed consent has two components, the principle of
explanation and that of voluntariness. In a litigious society the
neglect of either of these professional obligations will have different
consequences. A physical procedure without the consent of the patient
might be construed as an assault and could be prosecuted in a criminal
court. The failure to give proper information, on the other hand, might
be thought an act of negligence: a patient who, for example, is in some
way impaired as a consequence of treatment without having been told that
it was always a risk could take action for damages within the civil
. Thus the code for dentists speaks not of informed consent but of
‘information and consent’.

In practice neither informing nor the securing of consent is a
straightforward matter. A patient may be unable to comprehend the
technical detail of complete information. It could even frighten
patients from undergoing a beneficial procedure. I know myself to have
been terrified by the lists of possible side-effects that accompany
medications collected from the pharmacist and have been inclined to
tolerate the condition being treated rather than take statistically
insignificant risks. Information is necessarily selective:  a prudent
selection delivered in a calm manner by a consultant who seems to know
what he or she is doing may be more likely to secure consent than a
thorough appraisal by a nervous medical student.

The more information given, it seems, the less likely is the patient to

The right to give or withhold consent implies the right to know. This in
turn suggests an obligation on the part of professionals to inform. But
there is also an entitlement not to know and this is very difficult for
professionals to judge. Some years ago I suffered a paralysis from which
I was told with helpful assurance that I would recover and I worked at
physiotherapy and other means in the confidence that I would do so.
Nowadays patients are able to discover the mortality rate and limited
probability of recovery from the world wide web and can resign
themselves to a less active future. It helped me to be spared that kind
of intelligence!  

Again, some may have read in the newspapers of a recent case in the
United States in which a young woman entered hospital to donate a vital
organ to her father who otherwise would have died. Obviously, blood
groups were compatible. Both survived the operation. However, it
transpired that she and he were not biologically related. The inference
was that the mother had an affair of which neither the donor nor her
supposed father had been previously aware. They had the right to know
and the doctors had the obligation to tell them. But the consequences of
that obligation might have been destructive. Never mind what they
decided: we merely recognize the weight of the burden placed upon
professionals by the right to be informed.

Patients and Medical Research Ethics            
Bill Kent –Member of Brighton East Research Ethics Committee and
Secretary to reMEmber

In the NHS medical research is allowed only with the permission of the
Research Ethics Committees (RECs).  The people conducting the research
have to satisfy the RECs that patients have been fully informed about
the proposed research. This includes any adverse effects and that they
know they can refuse to take part or withdraw at any time.  This is a
safeguard to protect patients.

Posted by Janice Kent – Director, reMEmber
Part of our website is being repaired, sorry!

One problem that many CFS patients have is that they are denied their right to REFUSE a specific treatment and request something else.  I repeatedly made it clearthat I did not want anti-depressants, psychiatrists had said I was not depressed, anti-depressants are proven useless against CFS.  And left the appointment with a prescription for anti-depressants anyway because the doctor wouldn't let me refuse a treatment I didn't want.  (Of course, I did have the option of not filling the prescription, but that left me without any treatment for what truly ailed me.)

On one occasion, I repeatedly advised the doctor that the prescription he had just written was for something that I had been told by doctors AND pharmacists not to take because of a prior reaction to a related medication.  My attempt to refuse this prescription was rebuffed with assurances "it'll be fine".  A few days later, I showed that prescription to another doctor, who reiterated what I'd been told by multiple doctors and multiple pharmacists, with a blunt "are they trying to kill you?" 

I may have legally had the right to informed consent, but when I tried to exercise it, I was bullied, coerced, and left with no alternative but the prescription that the doctor wanted to make initially.  A right to refuse treatment under informed consent is useless if there's no reasonable alternative offered.  It was never "OK, if you don't want to take anti-depressants, how about a sleeping pill?"  It was always "take the anti-depressants and if they don't work, THEN we'll talk about trying something else."  Except that at the next appointment, it was the same old argument again, with only the name of the anti-depressant changed, and assurances that if the first three varieties didn't work, maybe the fourth would.  Never mind that I had research backing me up that no variety of anti-depressants will cure a virus, I could not have treatment for any of my symptoms -- not the intense pain, not the severe insomnia, not the digestive problems, and certainly not an anti-viral medication -- until they had tried every last anti-depressant on the market.

I AM now permanently impaired as a direct consequence of treatment because their insistence on treating me for something I don't have, while ignoring the proper treatments for what I was previously diagnosed with by a specialist, allowed me to deteriorate and suffer physical damage.  It should be a surprise to no one that a disease left untreated WILL get worse.

It's truly a "fate worse than death" to know that you'll never work again because you put your faith in doctors who were too stubborn to consider an alternative, and because your attempts to put Informed Consent into action were refused.  It's why I speak out publicly -- to make sure that other patients don't suffer the same fate. 

If your doctor will not consider anything other than an anti-depressant for your CFS and/or fibromyalgia, CHANGE DOCTORS.  Don't do what I did and think that you will eventually prove to them that they are wrong and you are right -- it's impossible, and it wastes valuable time in getting prompt treatment before the virus does permanent physical damage. 

My crucial mistake was in believing their assurances that "next time" (and "next time" and "next time" again) they would listen to me (and my prior specialist) and prescribe what I wanted instead of first wasting years trying one useless anti-depressant after another (and then being accused of "not wanting to get better and have to go back to work" when I reported that the anti-depressants made me sicker ... which is, in fact, a normal side effect of taking drugs for a condition you don't actually have).

And if you do suffer damage from a treatment you were not allowed to refuse, remember that you do have legal rights, but you have to act quickly.  Don't let the doctors and their "next time" promises string you along until your time to sue has expired.  My doctors knew exactly how long they had to make empty promises until I lost my right to apply for State Disability, and to run out the clock on my medical malpractice claim.  All they had to do was to keep sounding sincere in promising I would get what I wanted at my next appointment if I'd just humor them one more time, knowing that I was not likely to change doctors and re-start the process when I was supposedly "that close" to getting what I asked for.

Thankfully, a doctor I really could trust asked that question "are they trying to kill you?" and convinced me that I was being played for a fool in an attempt to eliminate what they knew could be a massive medical malpractice claim against their medical group, or I might still be falling for their promises of "next time" (or have taken something that resulted in death).

An Original CFS Patient Speaks Out

Latest eBMJ responses on White et al

Imprudent Neglect of CFS History

15 September 2007

Erik Johnson,
Incline Village NV 89450

The proponents of various reinterpretations of
Chronic Fatigue Syndrome appear concertedly
neglectful that CFS has a verifiable history which can
be  traced back to a very specific time and place -
and a particular pivotal phone call made by Dr
Peterson which set the entire process in motion.

It could have been different. The CDC might have
responded to any of a  number of different doctors
who were reporting the mysterious illness across  the
USA, but as it happened, Lake Tahoe seemed like a
more desirable place  to conduct an investigation. By
such quirks is history determined.

The initial identification of the epidemic to the direct
creation of the  partial symptom collation which was
called CFS can be traced in an unbroken  chain of
events performed by specific people who are still

There is no need for any confusion about what CFS
originally was meant to  describe, because the story
is accurately depicted in Osler's Web,  reiterated by
Dr Peterson's contribution to the Canadian Consensus
Guidelines, and the individuals involved are mostly
still alive, and able to  answer anyone who cares to
ask about their experience.

When a group of people is selected to become
prototypes for a syndrome, does  it not seem
spectacularly imprudent to conspicuously ignore them
and turn  the illness into something else?

-Erik Johnson
Incline Village 1985 Yuppie Flu survivor
1988 Holmes et al CFS study group participant
Competing interests: None declared


This is, unfortunately, the history of CFS in a nutshell.  Someone with the power to do so, so desperately wanted it to be merely hysterical depressed menopausal hypochondriacs that when it became apparent that patients like Erik and the school children in Lyndonville could not be written off as "menopause", the symptoms that differentiated CFS (or ME, if you prefer) from depression were quietly removed from the diagnosticcriteria.  Voila, by redefining the illness into something else entirely, Straus & Co. succeeded in getting their way: lump a bunch of patients whose actual problem *is* menopause/depression/hypochondria in with those of us who had a post-viral system collapse, and hope that no one notices the deception which "proves" Straus's initial uninformed statements.

Others circulated the misinformation that CFS patients were reporting every symptom under the sun, which proved that we were just imagining things, or faking to avoid work.  Small problem, those of us who really *do* have CFS (or ME, if you prefer) were reporting the same symptoms across the board, even without knowing other patients.  I didn't know anyone with CFS when I got sick, and wouldn't "meet" Erik for another 15+ years, yet I reported the same symptoms as Erik, hundreds of miles away.  That's either an incredible case of ESP, or proof that we have the same disease, because it's statistically impossible that we would choose the same symptoms from a list of zillions, and that thousands of other CFS patients would also choose the same symptoms from a list of zillions, if we really were "just faking".

Yes, there is a long list of symptoms possible in CFS, but eventually a neurologist clarified that every single one of them could be caused by Central Nervous System dysfunction -- there was that connecting link that made it all make sense.  Except to those who were trying to re-define it into something else entirely for purposes of their own, and didn't want to hear that there was a logical explanation for the cornucopia of symptoms.  This information was swept under the rug until the internet made it possible for people (like me) to make it public without CDC/NIH or the AMA having the opportunity to edit it out before publication. 

They've now succeeded in defining CFS in such a way that neither Erik nor I really fall into the category any more, but they've also eliminated in the US the ME diagnosis that would encompass us.  Like the fabled Man Without A Country, Erik and I (and many more like us) have become Patients Without A Disease, as the very patients who were the core of the investigation have been defined out of the disease that was created for them.

That's the real "inconvenient truth" -- that patients who were supposed to be the epitome of the disease called CFS now find that the "experts" say they musthave something else, but have taken away the historical Myalgic Encephalomyelitis diagnosis that would match our symptoms, leaving us adrift on a sea of rewritten history.

Sunday, September 23, 2007

Data Gathering

The followers of the Wessely-School, who use CBT
and specially GET to 'cure' ME/CFS patients, try to
select patients, who don't really suffer from

We know their tricks; some examples:

      *Sharp's (UNUM's) Oxford criteria.
      *Fukuda/Sharp's (UNUM's) CDC criteria
      1994, with which it is not necessary to
      suffer from post-exertional malaise. So if
      they only choose patients without this
      hallmark for their studies, they can get
      fantastic results, because they don't study
      ME/ICD_CFS at all.
      *The use of the already diluted Fukuda/
      Sharp's (UNUM's) CDC criteria 1994,
      WITHOUT the symptom criteria, like they
      did in Nijmegen (Netherlands) - mean
      Karnofsky scores 72 ! (Prins, Bleijenberg et
      al. Lancet, 2001).

In spite of this we know from many stories and
research, that there must be a lot of ME/ICD_CFS
patients, who became worse, bed- or housebound,
or perhaps even died after this 'therapy'.

The important article *Informed Consent to Medical
Treatment* posted on Co-Cure by Janice Kent:

Brought back an idea, which is already cooking in my
fragmented brain cells during a long period:

When there would come organisations, which gather
the data of all these patients (even on an
international level) and start legal proceedings
against these 'surgeons' and perhaps also the
governments, which tolerate these kind of 'cures', it
will soon be finished with the 'biopsychosocial model'
of *CFS/ME*.

I suppose much sooner than with all advocacy, which
hasn't helped during the last 25 years.

Jan van Roijen

* * *

This has long been one of the problems with "research" -- those who want to prove that CFS is purely psychological stack their studies with patients whose problems truly are psychological (i.e., lacking the physical symptoms such as the exercise intolerance/post-exertional malaise, digestive problems, fever, sore throat, etc.), and by studying people who have "chronic fatigue" but not post-viral Chronic Fatigue Syndrome, they prove what they want to prove, which is of no use to those of us who have something other than what patients in their research sample have.

These are people who supposedly had the intelligence to get through either medical school or an advanced degree in psychology, so you have to assume that their "stupidity" is intentional, and not an actual inability to comprehend that (small letters) chronic fatigue, a symptom, is not the same thing as (initial caps) Chronic Fatigue Syndrome, a specific collection of symptoms of which fatigue is only one of many.

The real problem seems to be people who reach a conclusion without learning the facts, and then refuse to listen to any facts which contradict their conclusion.  It may be stubbornness, or there may be a financial motive (getting the National Health Service to require all CFS patients to see a psychologist for CBT), or simple prejudice against women (the belief that all women don't want to work, espoused by several of my doctors who assumed that I wanted to be a housewife and couldn't get my husband to agree to support me).

And then there are those (like my ex-husband), who put their faith in experts to the point that they disbelieve what they see with their own eyes.  Before we went to the first doctor, my husband was convinced that I was really sick: he felt the fever, saw the daily vomiting, heard the daily diarrhea, saw me collapse with no muscle strength to even sit up.  After the doctor's verdict that the only thing wrong was that I didn't want to work, my husband persuaded himself that he didn't see these objective symptoms; the doctor said I wasn't sick, and therefore, none of these symptoms existed.

Thankfully, while my husband was so weak-willed that he discounted his own experience in favor of what the doctor told him to see, my boss was not.  He saw plenty of objective evidence of physical illness and would not let me accept the diagnosis of "nothing".

Unlike the doctor who had first met me after I got sick, my boss had something to compare it to, and was well aware that I had not gotten married with the intention of becoming a housewife: I had married a full-time student with the understanding that I would work full-time while my husband was in school.  My boss knew that I was not that stupid (or manipulative) that I would marry a student and then fake an illness to force him to drop out of school.  The doctor seemed to have missed the entire concept that I was the primary breadwinner, lost in the fog created by his automatic assumption that all women want to be housewives and will do whatever necessary to get their husbands to "let" them quit their jobs.

It's not the age of the doctor that's the problem -- a dozen years later, I got the same preconceptions from a doctor who wasn't even in med school when I first got sick.  He, too, assumed that I was unhappy having to work after the divorce and wanted full alimony so I could be a housewife.  (And made the same comments to a friend with a different disabling health problem; both of us had been the primary breadwinner throughout the marriage and had ex-husbands not in a financial position to pay any alimony at all, much less enough to pay all the bills.)  While that might be the goal of some women, it obviously is not the goal of careerwomen who were the primary breadwinner in the marriage -- if my goal had been to be a housewife, I would've married one of the lawyers I dated, not a full-time student!